Crossed Grain

ANNUAL REVIEW | 3 Diagnosis and care • We fought for the future of prescriptions with our campaign which resulted in the announcement from the Department of Health and Social Care to retain access to gluten free food on prescription but restrict the categories of food available. We continue to lobby CCGs that have already ceased prescribing gluten free food to reverse their policy in light of the decision. • Our Is it coeliac disease? campaign brought a further 50,000 people closer to understanding their symptoms through our online assessment. We are extremely grateful to ThermoFisher for their ongoing support. • We increased our GP connections tenfold with events throughout the year to engage with the gatekeepers to diagnosis and support improved knowledge of coeliac disease. • We continued to work closely with NHS Scotland on the development of a patient pathway to help patients get an accurate and timely diagnosis. • In Wales we took over coordination of the Care in Schools Alliance representing over 20 health charities and bodies across Wales to engage with the Additional Learning Needs Act 2018 and its associated guidance, to better support children with coeliac disease in school. “My mumwas diagnosed with coeliac disease and, after reading the article in your magazine about symptoms in children, we were convinced my daughter had coeliac disease too. She then got diagnosed and said to me one day, ‘mummy it doesn’t hurt when I eat anymore’.” Helen 2019 plans • Continue our Is it coeliac disease? campaign to improve diagnosis with further funding fromThermoFisher Scientific. • Complete our work on the evidence base for post diagnosis care and understanding what people are eating through our Coeliac Diet and Nutrition Survey (CDNS). • Develop a self care model for people with coeliac disease and scope out the services needed to support it. • Develop Wales wide special diet guidance for Local Authority caterers. NICE guidelines infographic we created for GPs (available to download from www.coeliac.org.uk/diagnosis ). 2018 was our 50 th Anniversary year, a milestone for the charity and the amazing community we have. Community was certainly the focus for the year, as we celebrated how far we’ve come and the special contribution of so many who have done so much over the last 50 years. Thank you to everyone who took part and made a special year even more so. This was a time to remember when we had less knowledge of coeliac disease and celebrate how much more we know now, whilst recognising there is more to do to develop our understanding. Hence we looked to the future too, with the launch of our exciting Research Fund, which got off to a flying start after a commitment of £500k from Innovate UK matched by £250k from the charity’s reserves, underpinning our first research call for the Fund. We want to see a better future for people with coeliac disease and this Fund will get us closer to the day when no one’s life will be limited by gluten. Mike Elliott, Coeliac UK Chair, Board of Governors A note from our Chair diagnosis and management of coeliac disease managing coeliac disease Personwithpossiblecoeliacdisease consider serological testing for coeliac disease in people with any of the following: gluten must be kept in the diet before testing The test forcoeliacdisease isonlyaccurate ifagluten containingdiet iseatenduring thediagnosticprocess.Before andduringdiagnosis, someglutenshouldbe included inmore thanonemealeveryday forat leastsixweeksbefore testing . Refer to adietitianand CoeliacUK forfurtheradviceandsupport, including localsupportgroups . Peoplewithcoeliacdiseaseshouldbemonitored annually toreview: • weightandheight • symptoms • adherence to theglutenfreediet • theneedforspecialistdieteticadvice . Consider theneedfora DEXAscan /active treatmentofbone disease,theneedforspecificbloodtests,theriskoflong-term complicationsandcomorbiditiesand theneedforspecialistreferral. Refer toconsultantorgastroenterologist ifconcernsarise . If while followingastrictgluten freediet,symptomscontinue,or if serological titresarepersistentlyhighafter12months,consider referring forbiopsyor toaspecialist for further investigation.Be aware thatpeoplewithcoeliacdiseasemayexperienceanxiety anddepression. Adults withpositiveserological result shouldbe referred toagastrointestinal specialist forendoscopic intestinalbiopsy toconfirm/excludecoeliacdisease. Children shouldbe referred toa paediatricgastroenterologist for further investigation. Forchildren ,testfortotalIgAandIgAtTGasthefirst choice,withIgGEMA,IgGDGPorIgGtTGifIgAisdeficient. Thefirstchoicefortesting iga ttg and total iga UseifIgAtTGisweaklypositive iga ema Consideranyof these theree if IgAisdeficient(totalIgAless than0.07mgper litre) igg ema igg dgp igg ttg Serological testing Gluten freediet Annualreview Endoscopyshouldbecompleted within6weeksofreferral Formore informationandsupport,go to nice.org.uk/guidance/qs134 or www.coeliac.org.uk/hcps Persistentunexplained abdominal/ gastrointestinal symptoms Falteringgrowth Prolonged fatigue Unexpected weight loss Severe/persistent mouth ulcers Unexplained iron, vitamin B12or folate deficiency Type1diabetes(at diagnosis) Autoimmune thyroid disease(atdiagnosis) Irritablebowelsyndrome Firstdegree relatives ofpeoplewithcoeliac disease Metabolicbonedisorder Unexplained neurological symptoms Unexplained subfertility or recurrentmiscarriage Persistently raised liver enzymes withunknown cause Dentalenamel defects Down’ssyndrome Turnersyndrome have a low threshold for re-testing people with symptoms as coeliac disease can develop at any age . ANNUAL REVIEW 2018